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Two steps forward and one step back

Damn it

I have been so overcome with so much that I haven’t been able to put all of my thoughts and feelings into words for days.

But I’m gonna give it a go today. 

Diego has kept me very busy with a myriad of sensory issues and impulsive acts that I thought we had conquered.  Diego has started touching again, not in inappropriate places, but inappropriate all the same.   Of course this is causing problems at school, and nothing we seem to distract him with curbs the behavior.  Kids are shunning him when he does this and it breaks my heart and because of his increased sensory dysfunction and anxiety, his language has also been extremely affected.  An outburst this morning had me ducking to keep from being knocked upside the head by D’s sunglasses while driving him to school this morning.  All because he couldn’t see through them and couldn’t find the words to express that he would like me to clean them.  He also can’t seem to be away from my side…errrr lap for more than 5 minutes and while I love cuddling, I also would like some space.  I’m not exaggerating either, I can’t get any time alone, it is like he is a drug addict and his drug of choice is my lap and ears. 

Maybe it is time to increase his sensory diet at home, another social story, stick harder to his visual schedule that he seemed to be doing so well without???

On top of things I have been sick the past two days which means he can’t be all over me and this hasn’t elicited the best behavior. Rickey has tried as much as he can to stand in, but D wants mommy.  Once I explained at length that mommy has bad germs, my germaphobe laid off a bit.  He now asks me every few minutes if I am better yet. 

So sick as a dog I took D to his neurology appointment yesterday (no way we were missing it as it takes forever to get in).  After giving Dr Trauner the run down of positives and negatives that have been occurring, she said two things that knocked the air out of me:  #1 his diagnosis has officially changed to High Functioning Autism, which would be great if it got D additional services but the regional center refuses to listen to the neurologist  and #2 She want to start him on Tenex for impulse and anxiety control before he starts school. 

Meds….

He is 5…

I don’t know what to do. 

I mean I trust her, Dr Trauner knows what the hell she is talking about.  I work in medicine, have done so for 9 years and I have seen medicine work for so many other medical issues.

But God I am so scared to go this route, I think it also cements the fact that autism isn’t going anywhere and I am having a very hard time with it.

So much for “acceptance”.

Anyway, Tenex is frequently used to treat high blood pressure, but is also used for other things.  Like the issues Diego and kids like him have.  It isn’t a stimulant or a narcotic.  I have read that the side effects are mild, one of which is drowsiness, and hell we could use some help with sleep in our house.

But what if it changes who he is??

No matter what I do, I am concerned that I may make the wrong decision….

On top of this Lyric is going through puberty, which enters an entire new realm of parenting that I am a complete novice at.

*sigh*

I’m doubting myself and I am sad along with so many other emotions.  If anyone reading this has had any experience with Tenex please share it with me.  If you are not comfortable writing it here an email can be sent to sonidoinquieto@gmail.com.

Thanks 🙂

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About sonidoinquieto

I hate writing bios *bio pending*

6 responses »

  1. Sending Hugs. We are looking at the medication options for my 7year old. It is scary when they are so young.

    Reply
  2. therocchronicles

    I feel you girl, all this stuff is so stressful. I don’t have any experience with meds and our kids but I’m sure others have and can let you know what has worked for them.

    Thinking of you!

    Reply
  3. Oh, sweetie, I totally understand those feelings you describe. I think we all do at some point or another. There have been so many times in Nik’s little life that we’ve been faced with what felt like impossible choices until something happened to force our hands. Everytime we’ve made sure the doctors heard and understood our concerns/fears/feelings, it was a win for Nik because we became a respected part of his team (in the eyes of the professionals). I would say, first and foremost, share your feelings with the doctor. Share your concerns and don’t be afraid to ask questions.

    I can tell you this, the doc is starting very conservatively by going to Tenex first. Nik is on Tenex (very low dose) and has had no side effects after the first week (very drowsy first few days then it wore off). But he also hasn’t gotten as much benefit from it as we had hoped.

    THAT being said, remember that every child is going to handle meds differently. And you need to make sure your questions are answered and your concerns are heard before you jump in.

    I’m here if you want to email me and bounce around questions, thoughts, etc. xo

    Reply
  4. I’m sorry. This all sounds really stressful. I wish I had advice for you, but I just have virtual hugs.

    Reply
  5. You write “No matter what I do, I am concerned that I may make the wrong decision….”
    I think we’re all faced with that everyday as parents, especially parents of kids with special needs. I too feel there are somedays when we’ve taken a giant step backwards, and the steps forward seem like baby steps. I have a kiddo who clings to my lap too – a constant cuddler, a sensory seeker when I’m a sensory avoider. Makes for tricky dinner making times (an understatement). I think we always have to just trust your gut and go with what you think is right at the time, and then reevaluate when needed. I don’t know you but you sound like you only have your son’s best interest at heart and if you trust your doc, and your gut, things can only go well. Best of luck.
    Alysia
    http://trydefyinggravity.wordpress.com

    Reply
  6. its only one step back. Try taking your self out of the picture and what would your recomendation be for another parent in this case. i love you Shivon and believe in your gut instinct. I think the confusion is normal and you will find your way. I am sorry that you have this battle but your a great mom trust that

    Reply

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